Another Victim of "JUST DCIS"

I SO agree with you Lisa-e, I totally feel that DCIS is over treated and doctors are too aggressive about treating it as an invasive cancer.  I was first diagnosed with multi-focal DCIS but medium grade in 2008.  Went through 2 lumpectomies and radiation.  In October of 2012, I had a very aggressive mammo tech get a view far to the back and close to the armpit area, just next to the original DCIS site, that showed calcifications.  Not knowing whether these had been there before (because it was a new view), they recommended another biopsy which I did and it came back positive for more DCIS.  Nothing invasive found either time.  Knowing that only 15-40%? of DCIS ever turns into anything invasive made me hesitant to do radiation in 2008 and now made me hesitant to do the mastectomy they were telling me was my only option now.  Due to my age they said, I should not mess around with this.  I am 52 and want to be around to get to know future grandkids so I let them convince me and had the mastectomy on March 25th.  Everyone assured me it would be a pretty easy recovery for me since I already had an implant post lumpectomies.  Well two and a half months later, I'm still trying to heal.  I had a nipple sparing mastectomy which ended up turning necrotic along with about 2 x 4 area to the right of the nipple.  Tried hyperbaric therapy for 30 days...dead skin started separating from live skin and my PS was worried about the implant being exposed so another surgery May 9th to removed the dead (but somewhat regenerating) nipple area along with the 2x4 area to the right.  Sewed me up and removed the large implant he had put in at mastectomy, put in an expander and sent me home.  2 weeks later this incision started to open at the right side.  On Sunday he put in a couple more stitches, removed 100ccs from the expander and sent me home again.  Last nite, I noticed another hole starting at the bottom of one of his stitches.  I go in today to see what he's going to do next.  

If I could do it all over again, I would NOT do the mastectomy.  I think doctors need to take a step back and rethink how they're so aggressively treating DCIS.  I've felt pushed to do things throughout this whole process.

And I forgot to add, absolutely nothing was found in the entire mass of breast tissue they removed at mastectomy.

I think I am at the other end of the spectrum on this one. I had a lumpectomy with 2 excisions. Still ended up with positive margins. Took a ton of tissue on the lumpectomy. Based on ultrasound and biopsies we were going to take a LOT less tissue. If I had known how much tissue we were going to take and still not achieve clean margins I think I would have opted for the MX instead. But hindsight is 20/20 I guess. Currently doing radiation to hopefully clean up the margin. After all I have read on DCIS, I know getting clean margins is a must and I don't have that. It keeps me up at night. Should have been less conservative and went for the MX.

Heart, I just want to add that, if the reason they are doing rads boosts to the "dirty" margin is that it is close to the chest wall, there is a chance that they would have required radiation even after mastectomy for the dirty margins.  There are individuals on the boards who have had radiation post mastectomy for dcis due to margin issues.

Interesting discussion.

nigade, my experience was somewhat similar to yours. I had two areas of DCIS, and a lot of DCIS in each area. My MRI showed that there appeared to be more DCIS than what appeared on my mammo. It also showed my left breast to be clear. My excisional biopsy had uncovered a small area of invasion - just a 1mm microinvasion - but that was evidence that my DCIS was starting to evolve to become invasive so it was pretty clear that it all needed to come out. So I didn't have a choice about the right breast mastectomy.  I opted however for a single mastectomy. I know that some women get more peace of mind by also removing the other breast prophylacticly, but I couldn't justify removing what appeared to be a healthy breast.  7 1/2 years later and so far, so good.

One comment to make.  Having a BMX does not mean that someone no longer has to worry about breast cancer.  All the breast tissue can never be fully removed, even with a BMX, so a recurrence or the development of a new BC is still possible, even after a BMX.  It's not common - it only happens in about 1% - 2% of cases - but it doesn't take much of a search of this board to find quite a few women who've unfortunately had this experience.  So it's important, even after a BMX, to do breast self exams, to remain watchful and to always get your checks when they are scheduled.

ballet, in my experience what you said is true, which is that my DCIS did take up much more space in my breast than my initial imaging showed. I've seen that with many other women on this board.  But I've also seen quite a few situations where the area of DCIS turned out to be smaller than it appeared on the imaging. My type of situation - having a wide-spread area of DCIS - tends to happen more with grade 3 DCIS; grade 1 DCIS often is very tiny.

My takeaway from this discussion is that it's important to realize how different two diagnoses of DCIS can be.  A DCIS diagnosis can be tiny, low grade and low risk to become invasive, or someone can have high grade DCIS that fills the breast and presents an immediate risk of invasion.  And all the options in between.  It's also important to realize that what is "appropriate treatment" differs not only by diagnosis, bit also by individual.

My feelings on this whole topic have shifted as I've spent more and more time on this board. I don't think I would have said this when I joined but today I will say that I do think that there is a lot of over-reaction to a diagnosis of DCIS and a lot of over-treatment of DCIS.  But that doesn't mean that everyone who has a MX is being over-treated. In my case, a MX was the only option to remove all my very aggressive, high risk DCIS.  I also believe that while over-treatment is a problem (every treatment comes with side effects), under-treatment of a serious case of DCIS is a greater problem. With all the press about "the over-treatment of DCIS", these days we seem to be seeing more and more women who have aggressive cases of DCIS who come here thinking that no surgery is required.  On the other hand, we still see women who have very low risk diagnoses who opt for BMXs.  The messages out there about DCIS are muddled and contradictory (by necessity because DCIS is so varied) and it seems that each of the messages is hitting the wrong targets.

Heart--I had the MRI after the first surgery, which was actually an excisional biopsy (because the core biopsy showed ADH), and before the other two surgeries.  You are right that it, then, sometimes shows only post-surgical inflammation.  I think Beesie's story is different from mine because more "stuff" was found post surgery (correct, Beesie?) They can also do mammos again.  I had that done.  I had the last two surgeries and rads at Sloan Kettering, where I am now a patient.  They will not be doing MRI's routinely for follow-up, by the way.  I'm not sure I agree with that, but I trust they know what they are doing.  Seeing bs for yearly follow-up and mammo/sono tomorrow. 

Hi Mepic,

I think you mean 1mm and 9mm, not .1mm and .9mm.  That would be tiny, tiny, tiny.  9mm is the same as .9 cm.  Seeing that you are Stage 1b, I'm sure that's what you mean.  Quite a story, nonetheless.  Your metaphor about the little fire is good, although those of us who are post-treatment kind of hope that the fire was snuffed out with surgery and whole breast radiation.  My risk (a al Beesie), now that I was treated, is much lower than before, when I had the previous pre-cancerous diagnosis (ADH, ALH).  Probably the relative risk was lowered by 50 percent (from 25 percent to 12 percent for 10 year risk--including both IDC and DCIS).  You definitely made the correct decision in your case, and the MRI helped you.  How were they able to say it was DCIS and IDC just from the MRI (you said they found DCIS and a small area of invasive)?  Can they make that diagnosis from the MRI alone?

Ballet12 you are absolutely right I shouldn't write before I had my coffee! The mri report said "...is an 8 mm irregular enhancing mass with type 3 enhancement. This is highly suspicious for an invasive ductal component." As it turned out after surgery it was 9 mm IDC.

While it could theoretically be possible that there is more somewhere else, I think realistically it's very unlikely.   It's much more common that the "more" is discovered once they start having trouble getting clean margins.   

I can't say the same thing has never occurred to me, but what I tell myself is that a routine mammogram picked up the known cancer - that probably means my breasts are "readable" by mammogram, so I'm not going to waste much time worrying about the possibility of hidden problems.    That possibility though is a large part of why I did go ahead with radiation and am now on Tamoxifen ... trying to do whatever possible to eliminate the threat of any stray cells that may be lurking undetected whether they have split off from the microinvasion or be the very beginnings of more DCIS too small to be detected yet.

Edited to add - I have my first post-treatment mammogram next week and have to admit to being just a little nervous about it!

Wow. I'm so confused/upset/confused.

I found a lump on my right breast. Had a mammo followed by an ultrasound and they said it was a clogged milk duct and to come back in 6 months. My family was not happy with that so i went back in 3 months. Ultrasound then being told I need a biopsy and 3 days later the call "um yes you have cancer" dont worry it DCIS, I was told.  I went to see the surgeon and they said ok we will do you surgery in 3 weeks and you need a complete mastectomy!!! WOW but its only DCIS! Oh and we can not do reconstruction because our plastic sergeon does not except your insurance. I was beside myself...I have a 1 year old baby at home. I went to another hospital and they did an MRI. I was told to keep my segery date because there wass not an area on my right beast that looked clean. The largest tumor was over 10 cm large. Again I was told it was a clogged milk duct! I had the mastecomy and it went fine. I changed hospitals and now am going for reconstruction and a left mastectomy. im considering a LD flap. Has anyone ever had that is it painfull.

Ballet12 -  Good luck with your biopsy ... I will be thinking B9 thoughts for you!    Since this is a 6 month check, they're only looking at the treated breast.  I'd feel better if they checked both, but I do understand the logic (why add the excess radiation exposure when there's no reason to suspect a problem).    I'm sure they'll do the other one at the 1 year follow-up.

Thank you Annette and Janet.

I'm sure it'll be fine.  They are just super cautious once you have the diagnosis in the other breast.

DCISvictim, to my understanding the National Cancer Instituation HAS NOT recommended that DCIS be renamed and classified as a pre-cancer. 

"In March 2012, the National Cancer Institute convened a meeting to evaluate the problem of “overdiagnosis,” which occurs when tumors are detected that, if left unattended, would not become clinically apparent or cause death. Overdiagnosis, if not recognized, generally leads to overtreatment. This Viewpoint summarizes the recommendations from a working group formed to develop a strategy to improve the current approach to cancer screening and prevention." 

So it is a taskforce that has made this recommendation; the NCI has not made a decision one way or the other.  The exact same recommendation was made to the NCI by another taskforce in 2009 and at that time the NCI decided against making this change. 

Here is the latest taskforce recommendation: Overdiagnosis and Overtreatment in CancerAn Opportunity for Improvement

In fact it's been a topic of discussion since well before 2009 that some doctors consider DCIS to be a pre-cancer. And other doctors vehemently disagree. Frankly, I think it's probably quite true that some diagnoses of DCIS may in fact be pre-cancers.  But other diagnoses of DCIS are very high risk, present as much risk as early stage invasive cancer, and need to be treated aggressively.  The problem is that we don't yet know which are which.  And that's why the question of whether DCIS is a cancer or a pre-cancer has been up for debate for years.

DCISvictim, what was the pathology of your DCIS?  If you had a small amount of low grade DCIS, then you quite possibly were over-treated (strictly from the standpoint of medical necessity) and it's quite possible that you had a DCIS diagnosis that one day might be considered to be a pre-cancer.  But if you had a large amount of aggressive DCIS (grade 3, particularly with comedonecrosis) then you probably had an 80%+ chance of developing invasive cancer (maybe a 100% chance) within a few years. Having the mastectomy when you did may have saved you from having to undergo much harsher treatments (chemo, for example) later on and it might even have saved your life.  I don't know if your diagnosis fit into the first type of situation or the second, or somewhere in the middle. But the point is that DCIS is a very heterogeneous disease and without understanding the specifics of someone's diagnosis, we can't assume to know what might be the appropriate treatment, or what might be over-treatment or under-treatment.

ttkslee, it appears that the greater risk you face is not from your current DCIS diagnosis, but from the very high possibility of another breast cancer diagnosis in the future, one that might not have such a favorable pathology.  I believe the reason why the attitude changed with the news that you are BRCA1+ is not because it makes any difference to your current diagnosis or the prognosis from your current diagnosis  - it is still "just DCIS" and the prognosis today is the same as it was back before you got your BRCA results.  But now you are different patient. Before you were an average patient with a Stage 0 DCIS diagnosis and an average risk to be diagnosed again.  Now you are a very high risk patient with a Stage 0 DCIS diagnosis and a high probability of being diagnosed again.

So the reason why a BMX is now being recommended for you has nothing to do with your DCIS diagnosis or a change in your prognosis from this diagnosis.  It's because you are BRCA+.